Too much effort for a sub-par life

[Kancer]

This is not my first time ranting about life but I feel that I need advise. I was diagnosed with Crohn's when I was 16. I didn't really care about that at that time and simply dismissed it as BS. At 19, I was put on 60mg Prednisolone as blood tests showed extreme inflammation despite me feeling nothing.

After my first course of prednisolone, I felt great for about 1.5 years. (More like learning to live life with getting a 100.5F fever at least once a week, bloating every day) I am always extremely anxious about anything such that even a sore throat would freak me out as sometimes the wrong medication can cause a flare.

Now I am on 20mg pred for 8 weeks with bleeding from hemorrhoids everyday. My vision is blurred and it is just sucks the life out of me. How do you people live with Crohns/UC. It is a curse and it is literally making me pissed off at life. I am a 21 male and I am only as tall as my mother (5'7) and my sister is taller than me (5'8.5) and my dad is 6'1.

I know most of you might not read it all but I am at the verge of losing my sanity. It feels like I have to more effort to live a sub-par life while everyone else can just do what they want and seem okay. It is like why the f*** am I even alive. I have a psychological appt next month for depression but it feels like I am not depressed.. more like I have just had enough of reality and I am just done with life. I am an accounting major and my career path seems like it would come with its stress. Crohn's seems to trigger with stress.. so how can i even make a living?

 

[Tuff]

I'm sorry you're having such a hard time. We all go through emotions like this. The 5 stages of grief and loss are: 1. Denial and isolation; 2. Anger; 3. Bargaining; 4. Depression; 5. Acceptance. Not necessarily in that order. I got to acceptance, and went back to depression. When in remission, I don't dwell on my illness, and then when I flare, I go back to square one. I think it would be good to talk to someone, even if you feel you're not depressed.
http://psychcentral.com/lib/the-5-stages-of-loss-and-grief/
You can learn how to deal with stress, maybe you can discuss that at your appointment. Hang in there.

 

[Scipio]

To begin with, I assume you are under the care of a gastroenterologist (GI). If not you need to find one right away. Crohn's is too difficult to leave the treatment to a non-specialist. Next you need to have a talk with your GI to understand and map out what is the plan to get your disease under control, off the prednisolone or other steroids, and onto a longer term medicine to control the disease - a strong medicine such as one of the biologics, probably in combo with an immunosuppressant.

Every case of Crohn's is different. It will likely take a fair amount of trial and error to find the right therapeutic approach to get your disease into remission and give you your life back.

You can't hide from Crohn's. It's not going to leave you alone. But it can be controlled. Many of us here are wrestling with issues the same or similar to yours. You will find unlimited support here. I don't know whether you are depressed. But one useful tool in beating depression is to have a project - something that demands attention and work. I suggest to make defeating the Crohn's your project. Work on it every day. Learn all you can about it. Focus on the details and find those that make a positive difference for you. Good luck. We are on your side.

 

[ronroush7]

Welcome. I agree about talking to someone professionally. I know that a lot of times when I am in a flare sometimes I can start crying for no reason. Everyone here is for you. If you need to talk , you can pm me

 

[Bufford]

I was not diagnosed with Crohn's until I was 40. Prior to that I always could not keep up with anybody else my age or older. Re curing rectal abscesses with fisulas and working while having them to make the payments was brutal at times, especially when the doctors could not find the cause. Just trying to have a bowel movement each time was a painful experience, to the point of fear when having to go. Very frustrating, once I had the diagnosis I could cope. Treatments helped to various degrees, but all have failed, but the permanent colostomy provided relief. Retirement has been very favorable, taking the stress off and allowing me to get my rest. You have a ways to go to reach retirement, hang in there and with hope there will be a treatment you find that will help. Life is difficult and don't ever feel that you are alone.

 

[Kancer]

I am on 500mg x 8 Mesalamine as my maintenance drug and have been on prednisolone for the last 3 weeks. I have 5 more weeks to go before the taper. I am extremely reluctant to use stronger drugs since they pose extra risks. I can't live with myself if I get something worse trying to fix Crohns. I feel that I am in a difficult position after talking with my GI.

I tell myself that Crohns is just a part of life and live with it but it just takes a toll. I was interning at a Big 4 over summer and I felt like my health start deteriorating (Bloating, Fever and Instantly sleeping the second I get home). I rescheduled my appointment and the doctor said I was in a flare however I didn't have any bowel issues and felt perfectly fine except for the fever. I was told to take 20mg preds.

I just can't help but think how my life would be in the future. Is there any career that I can opt for? I am 200% sure if I pursue a career with Big 4/Auditing, it would be at the cost of my health. But I need to make and save as much money as possible before my health deteriorating for good. Sorry for sounding really down but my life just doesn't seem to have much hope. I can't live with my parents and honestly, I do not even want to hang out or meet anyone (I do not even feel lonely since I just stopped caring about people).

I am just looking for how others with Crohn's managed their life. I feel like my compassion towards life is all gone. I am not suicidal but it's just irritating - I would just cry before sleeping.

 

[Clash]

Pred never did much for my son. He's only taken it once right after dx while waiting for remicade to be approved.

We also feared the big guns. But he was in such a state and his quality if life was so low that we were desperate for him to find some relief.

Since starting remicade(literally right after the first dose) my son's symptoms did a 180 and he was completely asymptomatic.

We have yet to find the med that will get my son to remission but he's 19 and lives on his own so it's important that he has a good quality of life. The stronger meds have done that for him.

Hopefully, his newest med will not only keep him asymptomatic but allow for deep stable remission with full mucosal healing.

You have to think of the risks that come along with uncontrolled or under controlled CD, as well. Those risks (bowel stricturing, obstructions, surgery, bowel cancer) are much higher than those associated with the serious med side effects. It's not just about no symptoms bit achieving remission so your bowel is healthy and cutting the risks of serious complications.

Maybe you could discuss your medicine concerns with the psychologist and your GI as well.

Hope you find remission soon.

 

[mom5272]

I'm sorry that you are struggling but we all do once in a while. On a good note, I've had Crohn's since I was 21, now 46. I have lived a great life so far. Yes, I have an occasional flare but I take care of myself, rest, lay off bad foods, don't smoke, don't drink, take vitamins and see my GI Dr consistently. It sounds like you need to find the right course of meds. I have another friend with CD that doesn't visit the DR, won't take meds, drinks and smokes and he is sick a lot and has multiple surgeries. I don't know your situation and I know some really struggle more than I have but I pray for your strength and that you get the help that you need because you have so much life to live. Don't let this disease get you down. I have a friend that has cancer and is only 21.. when I get down, I remind myself that this is manageable. We are here for you!

 

[ronroush7]

Amen

 

[TwiceAroundTheBlock]

Kancer,

I am so sorry for the way you are feeling right now. I am guessing that most of us spend our days being friendly and kind to people, so it is not like we are mean people, we just get very frustrated at this part of our lives sometimes, and we should be allowed to do that.

Since you ask what others may be doing to keep their Crohns at bay, I will chime in and say that I have been on Lialda for years and that seems to help me. (If you cannot afford it, the makers of Lialda offer a discount card on their site) Even then, I can only take ONE Lialda a day or else I get stomach cramping and gas.

But also, when my Crohns flares up, I have to switch to all bland foods, things that in a normal diet would not be the best choices, but really help me get my body back to as normal as possible: bananas, potatoes, white bread, rice, chicken, pasta etc., and nothing spicy, no raw vegetables, no corn, nuts, nothing high in fiber, no seedy fruits and vegetables. Try making veggie and fruit smoothies (no seeds and no pulp)...and here's a part that pissed me off many years ago but I have stuck to it for about 20 years except on rare occasion; nothing with carbonation. You might also find that coffee can cause major problems with Crohns. The good news is that they make fabulous decaf versions now so at least I don't feel like I am missing that...

And don't look at like you have to eat like this from now on, but hopefully you will see a big difference in just a few days and you can do it for a few weeks while you get some control back. Then slowly add things back in.

On a whole, I have learned to eat more bland and very little during the day while at work or if I go somewhere after work, or if I have to run errands on the weekends and then have salad, or spicy etc when I am home, and even then, I can't eat a lot of vegetables several days in a row; so bland food one evening, regular food the next and switch off.

Wishing you the best!

 

[Red Rabbit]

Hello Kancer

Your symptoms sound like how mine were. I learned to live with it to the point of believing it was normal. That was until I started going down hill. The doctors didn't really take a lot of notice because I was use to feeling s*** all the time. However, I was very ill. Ended with major surgery so the message is listen to your GI.

After five awful years of active disease and two major ops I am thinking the same way as you. The joy has been sucked out of life and I feel that it's not worth living this existence.
But when you face fear in its entirety not knowing if it's the end then you would do anything to live. Sounds dramatic but it's how I felt when I was very ill in hospital.

I have to remind myself of that. Can't says it's enough but it's better than the alternative. As for jobs, I am in a stressful job and it doesn't help but you have to just find ways to manage it. It's tough but get as much help as you can

 

[EmmaLou]

Hello

I can appreciate your feelings. This disease is an absolute swine, and I wouldn't wish it on my worse enemy. It feels that everything is a battle and nothing seems fair. Even if you don't feel depressed, seeing someone professionally might help. Depression is a term that gets quite badly misused. It's not only about feeling depressed or low, but can cause fatigue, apathy, make it difficult to deal with strong emotions like grief and anger, and can make it difficult to enjoy things that you usually would. Even if you don't have depression, or another mental illness, talking to someone with medical training about what you're going through might help. The people around us can't always appreciate what we're going through, or we might not feel comfortable talking to them because of embarrassment or fear of upsetting them. Talking to an outsider is a good idea.

Hopefully you can get the Crohn's under control in the near future, and things will get easier.

 

[Red Rabbit]

Emma Lou is right. You need to get some help and you need to get your Crohns under control. As others have said about meds, the risks that unmanaged Crohns can have can far outweigh the risks of meds. However it is a personal decision.
With remission you may feel a lot better about things. It won't always be this bad.
Crohns is a nasty disease. People talk about cancer being a terrible illness and it is. But you can get through cancer and then it's gone. Crohns can come back again and again in your life. I wouldn't wish it on my enemies either.
But there are a lot of treatments out there, there is a lot of support on this site and a good chance of a breakthrough in our lifetimes. So try and stay positive.

 

[ronroush7]

I am on 500mg x 8 Mesalamine as my maintenance drug and have been on prednisolone for the last 3 weeks. I have 5 more weeks to go before the taper. I am extremely reluctant to use stronger drugs since they pose extra risks. I can't live with myself if I get something worse trying to fix Crohns. I feel that I am in a difficult position after talking with my GI.

I tell myself that Crohns is just a part of life and live with it but it just takes a toll. I was interning at a Big 4 over summer and I felt like my health start deteriorating (Bloating, Fever and Instantly sleeping the second I get home). I rescheduled my appointment and the doctor said I was in a flare however I didn't have any bowel issues and felt perfectly fine except for the fever. I was told to take 20mg preds.

I just can't help but think how my life would be in the future. Is there any career that I can opt for? I am 200% sure if I pursue a career with Big 4/Auditing, it would be at the cost of my health. But I need to make and save as much money as possible before my health deteriorating for good. Sorry for sounding really down but my life just doesn't seem to have much hope. I can't live with my parents and honestly, I do not even want to hang out or meet anyone (I do not even feel lonely since I just stopped caring about people).

I am just looking for how others with Crohn's managed their life. I feel like my compassion towards life is all gone. I am not suicidal but it's just irritating - I would just cry before sleeping.

Research is being done all the time and wonderful things could be in the future.

 

[Kancer]

Thank you so much everyone! Very grateful for the replies and somewhat feels like I am not alone in this battle. I currently am advised to get off steroids since I might end up with steroid-induced glaucoma.

I have to choose between Mtx and Aza (Just started a new thread for that). I honestly am afraid of having to take either but I have no choice. Had constant fever for 15 days in a row when I tapered off steroids so I don't really think I have a choice atm.

 

[Justanothercp]

Kancer,
I hear you. This can be a very tough disease to come to terms with. But you don't have another option. So...
Have you discussed surgery with your MD yet? Are you at that point?
My advise, for what it's worth, is take whatever Meds you need- you have a life to live and you can't do that unless things are under control. Also, if you don't control the disease it can kill you, and/or make things much much worse. You need to keep as much healthy bowel as you can for as long as you can.
I would also suggest to really take a look at your diet. Diet made a huge difference for me, and many others.
Good luck. Keep your head up. Make the most of the hand you've been dealt.

 

[ronroush7]

Amen.

 

[TwiceAroundTheBlock]

As "justanothercp" stated, diet has helped many of us. Unfortunately that means something different than when a "normal" person goes on a diet, because "healthy Food" is not necessarily what we can eat, and when you first start working out everything you can no longer eat, that becomes depressing in itself at first, but having ruined my clothes previously on multiple occasions in public, it has become an easy decision to stick to. For me this means:
NO to:
Beans of any kind except green beans
Cabbages
Broccoli & cauliflower
Spicy foods
Milk, milk products like yogurt, cottage cheese, soft cheeses of any kind
Soy and any soy products
Raw vegetables like salad except on occasion (veggies must be very well done!)
Very low fiber (oatmeal only occasionally, only fiberous bread occassionally)
Grapefruit
Garlic, onions or mushrooms
Most red meats (which pretty much leaves only chicken- I eat a lot of chicken!)
Carbonated drinks or carbonated water
Tap water (I always drink purified water)

But I also want to mention something I stumbled on, on my own and my doctors never tied the two together and it makes me wonder if other / all Crohns patients have the same issue: my body produces too much bile. (It makes your poo appear green).

This is important because bile acts just like a Crohns flare up in every way. (Horrendous Diarrhea, nausea, vomiting, excruciating stomach pains) At one point I thought my Crohns was going very badly and it went on for 2 years, until I figured out I must have gallstones. Sure enough, that is what it was. Unfortunately they yanked out my gallbladder instead of getting rid of the stones and now I have even more bile, however I am able to completely get rid of all the symptoms by taking a very inexpensive powder called Questran every day.

So my point is, that maybe if your symptoms aren't subsiding, maybe ask about your gallbladder, or taking Questran even if you don't have bile or gallstone issues, because it stops diarrhea and cramping, swelling and gas.

And as for life decisions, stress definitely makes things worse. In the past I have had to switch careers, walk away from non-friends, and even end a marriage (he said this was all in my head even after I was diagnosed), and start my life over in many respects.

Sounds overwhelming but you never do it all at once: take baby steps.

Fast forward 15 years and I am now married to a wonderful person, have good friends, have a challenging but non-stressful job and I am healthier now than I have ever been, even though menopause is causing issues for now, but I can't blame Crohns for that!...

 

[amyh]

I agree with the diet and lifestyle. Until you find a good maintenance drug, try changing your lifestyle with the right foods and supplements . Start eating foods that fight inflammation. I started turmeric and probiotics and they helped me a lot. I also have anxiety with medication. I have to be careful what I put in my body, so I made a lifestyle change and fast forward a few years, Im in remission doing great on no medication at all except the supplements. Don't quit your meds, but start healing your gut from the inside while using the meds for management. Its a slow process, but so worth it!